Girl's Need Breathes Life Into Debate Over Organ Allocation

Sarah Murnaghan, on May 30, as she and her parents marked the 100th day of her stay in Children's Hospital of Philadelphia.

Murnaghan family
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Originally published on June 10, 2013 4:38 pm

The case of a Pennsylvania girl who is dying from cystic fibrosis has sparked an emotional debate over how the nation allocates lungs for transplantation.

Ten-year-old Sarah Murnaghan is in intensive care at Children's Hospital of Philadelphia awaiting a lung transplant. Under the current rules, lungs from adults are offered to other adults and adolescents before being offered to children younger than 12.

But Murnaghan's parents challenged that rule, and on Wednesday U.S. Judge Michael Baylson in Philadelphia took the unprecedented step of issuing a temporary order requiring the girl to be placed on the adult list.

"I can safely say I've never been hugged harder and longer in my life," says the family's attorney, Stephen Harvey. "They're very happy."

But Harvey says Murnaghan, who was diagnosed with cystic fibrosis when she was 18 months old, remains gravely ill, and the family hopes that suitable lungs will become available soon.

"She's very sick. If she doesn't get a donated lung, she will likely die within weeks," Harvey says.

As word of Murnaghan's plight spread, members of Congress started pressuring the federal government, which oversees the organ allocation system, to intervene. Earlier this week, Health and Human Services Secretary Kathleen Sebelius was grilled about the case during a congressional hearing.

"Occasionally we have the opportunity to truly affect, in a singular and specific way, somebody's life," said Republican Tom Prince of Georgia. "And Madame Secretary, I would suggest you have that opportunity with Sarah Murnaghan."

Sebelius said she understood the family's desperation and the congressman's concerns. "I can't imagine anything more difficult. We have far too few donors and far too many desperately ill people," Sebelius said.

But Sebelius declined to order the transplant network to change the rules. Instead, she asked the network to take a look at the policy — a process she said could take months. In the meantime, Harvey went to court.

"All we're asking for is that children be treated fairly, and that they stand in line for this large pool of lungs donated from adults based on the severity of their medical condition, just like people over 12," Harvey says.

And after holding a hearing on the request Wednesday, the federal judge ordered that Sarah be placed on the adult list at least for the next 10 days, after which he'll hold another hearing on whether to extend his order.

But the judge's decision is raising many concerns, including a technical one. Most children who need lungs can get them from other children, avoiding the need to figure out how to make an adult lung fit into a child, says Stuart Sweet, a pediatric lung transplant surgeon who is on the transplant network's board.

"Lungs from adults require trimming or use of lobes, rather than the whole lung, and that approach is not commonly used in pediatric lung transplantation," he says. "There's an added surgical complexity to using lobes rather than lungs."

Others in the medical field worry about the precedent the case sets. Bioethicist Arthur Caplan of New York University envisions others asking to get their children on the lung list, too.

"And then I can start to see other people saying, 'You know what, I need a liver. I need a heart. Where's a federal judge? Put me on too,' " he says. "Are we going to give organs to people who yell the loudest? Are we going to give organs to people who can organize a publicity campaign?"

In fact, on Thursday, the same judge ruled that an 11-year-old boy at the Philadelphia hospital be put on the adult lung transplant list.

A judge in Philadelphia has issued a highly unusual order in a case about an organ transplant. The ruling says a 10-year-old girl awaiting a new lung must be placed on the waiting list for adult lungs.

That contradicts current rules for how lungs are distributed. As NPR's Rob Stein reports, the case has ignited an emotional debate over how organs are allocated for transplantation.

ROB STEIN, BYLINE: This case centers on Sarah Murnaghan, who has been fighting the lung disease cystic fibrosis since she was 18-months-old. Sarah's now in intensive care of the Children's Hospital of Philadelphia, clinging to life. Steve Harvey is a lawyer representing Sarah's family.

STEVE HARVEY: She is very sick. If she doesn't get a donated lung, she will likely die within weeks.

STEIN: The problem is lungs are very scarce, especially for kids. And so the way the system works now, lungs that become available from adult donors are offered to other adults.

HARVEY: Children can only share in that pool at the very back of the line. And so the most severely critical child can't receive a lung donated from an adult until it's been first offered to and declined by all adults and adolescents. It's not the fairest way to do it.

STEIN: So Sarah's family started pushing to get her on the list for adult lungs. Word of her plight became public and members of Congress started pressuring the federal government, which oversees the organ allocation system, to intervene.

Earlier this week, Health and Human Services Secretary Kathleen Sebelius was grilled about the case during a congressional hearing. Here is Congressman Tom Price, a Republican from Georgia.

REPRESENTATIVE TOM PRICE: Occasionally we have the opportunity to truly affect, in a singular and specific way, somebody's life. And, Madame Secretary, I would suggest that you have that opportunity with Sarah Murnaghan.

STEIN: Sebelius said she understood the family's desperation and the congressman's concerns.

SECRETARY KATHLEEN SEBELIUS: I can't imagine anything more difficult. We have far too few donors and far too many desperately ill people.

STEIN: But Sebelius declined to order the transplant network to change the rules. Instead, she asked the network to take a look at the policy, a process she said could take months. In the meantime, Harvey went to court.

HARVEY: All we're asking for is that children be treated fairly and that they stand in line for this large pool of lungs donated from adults based on the severity of their medical condition, just like people over 12.

STEIN: And after holding a hearing on the request yesterday, a federal judge in Philadelphia ordered that Sarah be placed on the adult list, at least for the next 10 days, when they'll hold another hearing. Harvey says Sarah's parents are thrilled.

HARVEY: I can safely say I've never been hugged harder and longer in my life. They're very happy.

STEIN: But the judge's decision is raising lots of concerns. Stuart Sweet is a pediatric lung transplant surgeon who is on the board of the organ network. He says most kids who need lungs can get them from other kids, avoiding having to figure out how to make adult lungs fit into a child.

DR. STUART SWEET: Lungs from adults require trimming or use of lobes, rather than the whole lung, and that approach is not commonly used in pediatric lung transplantation. There's an added surgical complexity to using lobes rather than lungs.

STEIN: And other experts worry about the precedent being set by the case. Arthur Caplan is a bioethicist at New York University.

DR. ARTHUR CAPLAN: I can see other people saying, well, my child also needs a lung, and I want a federal judge to put her on the list. And then I can start to see other people saying, you know what, I need a liver, I need a heart, where is the federal judge, put me on too. Are we going to give organs to people who yell the loudest? Are we going to give organs to people who organize a publicity campaign?

STEIN: In fact, Harvey went to back to court today for another child placed on the adult list: an 11-year-old boy at the same hospital who also needs a lung transplant. In the meantime, Sarah's parents are hoping lungs that match their daughter become available soon. And the organ transplant network is meeting on Monday to take a look at the rules that prompted all of this in the first place. Rob Stein, NPR News.

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